I’m not a worrier – I just don’t have the gene. Even when I hear about about natural disasters (such as floods and earthquakes), I don’t think, “What if that happens here?”

But there is one thing I worry about (full disclosure – there are two things and the first is that anything should happen to my daughters -but that’s another topic).

I worry about being in a situation where I can’t get the medicine I need to keep the multiple sclerosis at bay (in my case, Avonex) and the supplies I need to take care of my ileostomy.

That’s why Amy Tenderich’s post at DiabetesMine.com literally sent shivers up my spine. In the post, Preparing for the Worst”, she refers to a CNN article, “Docs List Who Would Be Allowed to Die in a Catastrophe” , ” an influential group of physicians has drafted a grimly specific list of recommendations for which patients wouldn’t be treated.” The list specifies severe chronic diseases that would not be able to be attended to in case of such emergency. If you want to check the list, I suggest you look at the article. It includes a lot of us.

I file this stuff under V for vulnerable. When I developed a second chronic illness, worse than the first, I realized that I, too — a white, Jewish, well educated and affluent woman – was vulnerable, just like a lot of the rest of the world.

The good news for me is that the wake- up call didn’t come too late. I still had time to learn that my best bet is to live my life as if each day is all I’ve got. It doesn’t always work. But when I forget, at least I know that I have to remind myself.

What do you do to remember this truth?

Rosalind aka cicoach.com

 

4 Responses to “Living with Vulnerable”  

  1. 1 Maria

    Vulnerable is a good way at describing how many – including myself- feel when we have to make the decision to either earn more to ease the monthly budget or work and live with less in order to maintain our prescription assistance programs. Living with less is fine with me, however the stress I feel when I pinch my pennies only adds to the problem of managing my lupus/kidney disease. I continue with a gratitude journal that sets me in the moment of knowing I could flare or lose my meds at any time, leaving me without medical coverage. It inspires me to be thankful for another day to care for myself – do anything I can to help my body calm itself and control the disease progression, if possible. I think those of us living with illness become much more resilient than we realize and can face some pretty daunting situations- stemming from either our own bodies or doctors in ivory towers.

  2. 2 Rosalind Joffe

    Maria, Those are some pretty difficult choices – choosing between not great and not great. Good for you that the gratitude journal works.

  3. 3 Celeste

    Those of us with chornic illness are just more aware on an hourly basis of our vulnerability. We are all vulnerable. I work a very stressful full time job and am also on hemodialysis three days a week. If a catastrophe were to hit– I would need access to my unit (electicity, clean water, nurses) etc.. and without dialysis I would die in two weeks. It would be a big bummer– but i don’t let this occupy my thoughts– I let it motivate my day. I enjoy what I do– it has a lot of pressure– but it is not life threating and I take each interaction with that as my measuring rod–

  4. 4 Rosalind

    So true . Among other things, chronic illness can make us more aware of our vulnerability. But it sounds as if you’re clear about what you need to do to keep that from getting in your way.

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